LOVE & PAIN

IT IS ALL ENCOMPASSING.

It is a feeling of euphoria, yet, can be a feeling of sheer anxiety & torture at the same time.

It’s a tightness in your chest, it’s a shortness of breath, it’s a physical pain in your heart, as if all the blood is being drained……drop by drop……….making your heart beat faster…….trying to keep up with your shallow rapid breathing………..you feel as if you will lose consciousness………..the world around you is spinning before your eyes……….there is a painful gnawing inside you………… where are you i miss you you are my everything

The thought of tomorrow without you makes the pain somehow worse……how is that even possible?…….to be worse I mean…….how can it possibly be any worse.

Do you understand? Do you know how I feel? I hope you don’t……………….

DO YOU KNOW WHAT TRUE LOVE FEELS LIKE? THIS IS TRUE LOVE THAT CAN NEVER BE……..

Next week, March 19th will make 2 years that you are gone….. that’s 24 months, 730 days, 17,520 hours, ….. no matter how you look at it, its a long time. An eternity really, but, just seconds in the actual realm of my reality. I hear your voice calling me from across the house……

I’m cooking dinner, I glance and see you sitting at the bar playing on your iPad…then you are suddenly gone…………….

I go to your room, I lay in your bed, I hug your Build-a-bears…….. I go in your closet, my fingers caress your shirts that hang so neatly, waiting to be worn……………

I look at your toys, your most prized possessions that Sergio guards for you…..but you will never return to play with them will you????? What will happen to them when Sergio grows up?????????????

What will I do with your “stuff” ?????? I know I will keep it all………. but when will you be back???? When will you come play again??????? When will we cuddle in bed and watch midnight movies??????? When will we have midnight snacks at 4am???????

Can it really be that this will never happen again…….REALLY????????

That’s so hard to accept.

I walk past your pictures, kissing each one as I pass, my lipstick stains on every frame……………..it’s just not the right…….

I talk to you as I drive…………. punch buggy blue, yellow or white…………. did you see it?

“Mom, what did you say?”….. “Oh, nothing,…..I was talking to Sal”………………..

Do my kids think I’m crazy? Do they understand?

Will they remember their baby brother 10 or 20 years from now? Will they remember his laughter? His fighting spirit? How much he loved Club Penguin? His love of music? How much he loved Pitbull? How much he loved to dance? How he always wanted to go out to a Chinese buffet? Will they remember his favorite color was blue, or that he loved to watch Spongebob & iCarly? Will they remember he was the blue Power Ranger? Or that he was Captain America? Will they remember his 80 birthday celebrations? Will they remember his love of swimming and pina coladas in the pool? Will they remember his voice as he sang I am Blue………………..

What will they remember???????????

How do I keep them…………..or anyone……………… from forgetting……………

How do I get people to think of you every day? How do I get people to understand how devastating Childhood Cancer is?

Have you ever woken up with a broken heart?

Have you ever felt as if all the blood has rushed out of your barely beating heart and your lungs are about to collapse due to the agonizing pressure? Have you felt all the life leave your body and you lay there without an ounce of strength, barely able to breathe from the seething pain………….and hardly able to raise a limb? You see people all around you, but no one seems to notice….. they go about their lives – oblivious to the dire state of your gravely broken heart. You somehow learn to live with this torment, this numbness, this acute sense of deprivation that very few understand. You live each day as you have to…….only partially conscious, going thru the motions as you have to until it is time to sleep……… you find yourself begging for sleep, that unconscious state where you feel no pain…………..

The world continues to revolve, the sun continues to rise, humanity continues to evolve…………….yet, for you, time has come to a halt…………..never to advance again.

Can you imagine living with this burning affliction day in and day out?

This is my life now……….

I was not shot in the heart as many of you may have assumed.

I am the victim of a broken heart from grief.

This blog is just a collection of random thoughts thru my eternal struggle to survive with out my true love, my amazing baby…………

Salvatore Antonio Vanni

Aprill 22, 2007 – March 19, 2011

Eternally 7

Those of you who know me, my husband or have followed my caringbridge site know of my agonizing plight over the last 5 years. For those who don’t I will recap…….

My baby was born full term & healthy, weighing 8lbs, 20in on April 22, 2003. He was a very happy healthy baby and toddler until one day in August 2007 when he suddenly said his leg hurt. We attributed it to a fall from a grocery cart a few days before. An xray revealed no abnormalities, or at least that is how the radiologist read it. Within a week my precious baby could no longer walk. Blood work ordered by his pediatrician thru my husband showed many abnormalities and I remember it seemed we were suddenly at Holtz Childrens Hospital, where he was sent for scans and a biopsy. My head was spinning, I didn’t understand, I was told to hope for Juvenile Arthritis but to pray for Leukemia. What? How could this be? He was fine a few days ago…….. He was running around with Sergio like a normal 4 year old……how could this be happening?????? I didn’t understand…… I still don’t understand……

On September 10, 2007 we were given the diagnosis of Stage IV Neuroblastoma cancer, with very little hope of survival. 20% chance to live 5 years they said…..can you imagine???? How could this be happening?????? The very next day my husband and I left our children with family and flew to New York City to Memorial Sloan Kettering Cancer Center, to the Neuroblastoma experts of the world. The rest, as they say…………….is history……

The following 3 & 1/2 years, in over 6 states, my baby went on to have 12 surgeries, over 55 cycles of chemotherapy, 50 rounds of radiation, and over 400 days of inpatient hospital stays. He went into renal failure several times and underwent numerous torturous toxic treatments. He had a scar from his original tumor resection surgery that reached from his mid back across to the front of his body down to his groin. Can you imagine your baby being split in half to remove something so lethal????? At only 4 years old?????

He coded and died on the table at one point in 2010 after an extremely toxic experimental treatment in Philly, he was intubated for two weeks but somehow miraculously survived. I was then given an extra 6 months to say goodbye. I did not know that at the time. I was sure God had to give him the cure we so desperately seeked after all he had just gone thru. I was so wrong. The following 6 months were mixed with happiness, pain, joy, and more pain & suffering until finally his little body could take no more and he died a very slow and agonizing death on March 19, 2011 at 12:10 pm, laying on my lap in Holtz Childrens ICU surrounded by all the people he loved and loved him. I watched my baby take his lastbreath and wished with all my being I was taking mine at the same time.

This is why I have a broken heart………………

This is why each day is an eternal struggle to survive…………

In my baby’s short 7 years he taught me the true meaning of LOVE, COURAGE and HOPE. We were never apart during his short time on earth. There were times I went 2 weeks without taking a shower so as not to leave his side. We slept together wrapped in each others love and comfort, whether it was in a hospital bed, his NY apartment, a hotel room near a hospital or our wonderful home, we spent every waking & sleeping moment TOGETHER. We fought this evil disease like noone has ever fought before.

Now I find my self alone, but not physically of course. I have my family…..a husband and 4 other beautiful children that I adore…… but my heart is broken. There is no longer the joy and happiness that once dwelled within me. I may smile and laugh but the darkness and emptiness within is always there. The void in my heart is overwhelming and will never ever be filled.

I look forward to the day my precious baby and I will be reunited and I now live each day for the signs he so regularly sends me. I am mad at God for taking him from me…….how could he do that when I was such a good Christian??? How could he punish me this way????? I lived a perfect Christian life, I taught Sunday School, I sent my kids to Christian school for 11 years, I prayed to God every single day of my life…….. How could he have made my baby suffer so???? How could he make me suffer like this for the rest of my life?????? How?????? Someday I may know the answer………….someday that could not come soon enough….